Category Archives: cystic fibrosis

Would You Like a Filter for that Dream, Sir?

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My wife and I visited a new friend this weekend. He has three Harley-Davidson motorcycles in his garage and is quite the collector. The bikes looked pretty inviting standing there ready to go, an adventure waiting to happen.

I know nothing about motorcycles. However, this morning I thought to myself, “I should buy a motorcycle.” I really did. And for about two minutes I believed I could do it. Yes, I thought I could go out and buy a motorcycle and ride it. I pictured myself flying down PCH, speeding past cars and enjoying the ocean air. I was so cool.

Then I remembered I have CF and the dream burst like my lung during an infection. Play the emergency braking and motorcycle crashing against a wall sounds. Dream over.

How did I believe I could maneuver a heavy bike through L.A. traffic, breathing all of those exhaust fumes? I’d be coughing up blood 30 seconds into my first ride. Do you know how difficult it is to ride with the inside of your face mask covered in blood?

These two-minute fantasies are one of my least favorite parts of cystic fibrosis. I have them a lot. Yeah, sure I can fly to Europe on business. (Count to two minutes.) No, I cannot fly to Europe. What was I thinking? I’m a complete idiot. Did I really believe for a minute that I could do that? That it would be smart to take an 11-hour flight? How did I let myself believe it?

It’s almost as if I have the thoughts of a normal healthy person and it takes these thoughts a couple of minutes to reach the “CF filter.” Some thoughts pass through this special strainer just fine – go to McDonalds and buy a McGriddle. Eat the McGriddle. Wish you had one more McGriddle. Other thoughts? Well, they get filtered – ride your Harley to Malibu and meet two Brazilian supermodels who are only interested in a one-afternoon stand.

Oh, yeah, and then there’s the “I have a wife” filter.

Decision making made harder

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Cystic fibrosis has screwed up my ability to make decisions. I was wondering why I’ve taken two months to decide on a used car – haven’t decided yet – when I realized it’s CF’s fault. Obviously, I can blame the disease for many things, which I’ve done on this blog, with coughing up blood being the obvious winner. But “decision making” surprised me when I realized what was behind the agony I feel making important decisions in life. I didn’t always have this problem.

Over the years, I’ve had to agonize over every decision related to CF I’ve ever made. Which doctor to see. Which hospital to go to. Whether I should go on IVs or not. How long to stay on IVs. Whether to call the doctor or not. Take the oral antibiotics or not. And there’s the classic and grizzly bear of all decisions: Should I go to the ER or not?

To have this disease is to live a life of having to make what may be life-altering decisions. Decisions born from CF have more riding on them. They are not the same as picking a paint color or a restaurant for dinner. When you’re looking to gain any edge you can, a wrong decision feels deadly and heart-breaking.

And wrong decisions don’t go away. They hang around in your subconscious until it’s time to make another important decision and you remember the last time you had to make a decision and how you screwed it up in a big way. Bad decisions are like thrown boomerangs you forgot about until they whack you in the back of the head.

I find that this problem has bled over into my normal course-of-life decisions. I analyze everything to the point I can’t decide one way or another. This damn car. What should I buy? How much should I spend? Private party or dealership?

I fear a bad decision more than I fear the reaper, giving the Blue Öyster Cult song new meaning. And I probably need decision-making therapy. If only I could . . .

[No decisions were harmed, or made, in the writing of this post]

Carry the Load, Crybaby

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If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.

So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.

And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)

I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.

This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.

I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.

Used Cars and Oxy-“Morons”

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I’ve been searching for the perfect used car now for over a month. I’ve been looking for a wagon – Volvo, BMW, Audi, or Mercedes. Just a simple used wagon. But there is one other problem. I’m frugal. So, I find wagons and they’re out of my price range or I can’t negotiate the price I want. Or they’re too old. Or, and this is the most common killer of me finding my dream car, they smell like smoke or the chemical used to cover up the smell of smoke. That’s right. I’ve come close to buying several wagons, most of them BMWs, and guess what’s stopped me in my tracks – smokers. There’s a twist of fate there when people ravaging their lungs with cigarettes prevent me from getting a car. Every decision in my life is connected to breathing or someone else’s breathing, or so it seems.

My wife found this wagon for me, which tells you a little bit about her rubbing salt in the wound and the neighborhood we live in.

I also have the pressure of making sure I buy a car that is safe and reliable because should something happen to me the car I choose will be driven by my wife with my daughter riding in the backseat. They’ll also be driving and riding in it now, too, so it needs to be road worthy, unlike the 13 year-old Ford I’m driving. I don’t like them in the Ford and thus the reason for a new used car. This situation creates a mental hell for me when I find something older and inexpensive, which is easy on the bank account, versus something newer and more expensive. Can I take the chance on the older car? Then, I’m conflicted with the following logic: “well, I’m going to die soon anyway, so I might as well get a nice car and spend the money.” Argh, double argh.

During the last month, I’ve dragged my daughter to dealerships all over Los Angeles. We’ve had some fun, like finding an IHOP near a dealer in Santa Monica and having pancakes for lunch, which she loved; and discovering a cool outdoor shopping area in Glendale with a store full of robots. My wife gave us a strange look when she asked us what we did that day and we replied: “we had a robot fight.”

I wish the past month had been all fun and games. I’ve had some of the typical negative car-buying experiences, but I’ve had good ones, too, with very nice, honest sales people. I have plenty of stories, but here’s the one that best typifies the conundrum of my used-car buying experience – so far.

I called a woman selling a 2002 Volvo wagon. When I asked her for the VIN so I could run a CARFAX report, she told me I’d see a few minor fender-benders listed. However, because she worked for an insurance company, she was able to get the damage fixed and, as a bonus, had manipulated the insurance report to include getting minor dings and nicks repaired. She was proud of her cleverness, though some might consider getting your employer to cover repairs not normally covered to be a gray area of honesty. This became more confusing when I told her I was looking for a car free of damage and she replied with “at least you know I’ve been honest with you.” Yes, I thought. Yes, you have. But why do I feel one or us needs a shower right now?

And the search goes on. And on. And on.

Ocean waves of despair

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[I apologize in advance for this post. I had to get it out and off my chest so I can move on to better days.]

I’ve been struggling for days trying to describe a certain funk I’m experiencing. As with any new year, it’s a time to look out on the coming 12 months and think about what’s ahead. And that’s what started what I like to call waves of overwhelming despair. I’ve been unable to escape them.

One after another, they arrive without a break in sight

My lung function recently dropped from 65% to 55% after two embolizations and two hospitalizations. I did a good job ignoring it over the holidays as I concentrated my energies on being happy by not coughing up blood. But the cold hard slap of coming back to work this week combined with the fact I can’t breathe as well has delivered a great sense of hopelessness that I will not be able to maintain my life as I know it. What does that mean for the coming year? How many hospitalizations? How many times will I have to tell them at work I’m in the hospital and go through the process to be allowed to work while locked up? At what point will I not be able to continue this crazy game?

I’m lucky to have a great job and one which allows me to work with cystic fibrosis. I’m been doing it for over 10 years but would have worked my way up the food chain to new challenges, or a new company, in normal circumstances. Now the work has become a bit stale and I’m going to have to look for ways to change that and make it more exciting and less of a grind. However, with the clock ticking and my days numbered, a little voice in my head screams out each time I spend a minute of my remaining time writing a pointless email or playing the corporate game of going with the flow. The combustion created by the opposing forces of survival in the real world and the fantasy of making every moment count for something has created internal conflict. My patience for meaningless tasks has grown paper-thin. And one edge of that paper is on fire.

To make matters worse, the mental tools I use to fend off these black moments have failed. Yes, I am lucky. Yes, I have lived past all expectations with a brutal disease. Yes, others have not and I need to cherish each day. However, I want more. I want it all. And I know I can’t have it. I don’t just want it for me. I want it for my wife and I want it for my daughter and feel bad I haven’t given them the storybook life they deserve. And I can tell you that without those two anchors I’m not sure I’d escape some of the more challenging emotions of feeling like life is crumbling or a fear of the future.

Worst of all, I know I have no right to the emotion of despair. I have no right to whine about it. Yet, I can’t help but feel it at times. And that in itself makes me upset. I should be able to look at the big picture of CF and remember those who haven’t been so lucky and just keep my mind calm and my mouth shut. Perhaps this post will help me purge it and get my tools working again. My mantra: I am lucky. I have been given so much. One day at a time. The future will be what it will be.

I apologize for these thoughts and ask you to bear with me as I pick myself up from my momentary weakness and stop feeling sorry for myself. Someone toss me a towel, this water’s cold. It’s time to get out.

Two weeks living like a Zooble

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I’m happy because 2010 didn’t end with a hospitalization due to coughing up blood. Instead, I spent the two weeks with my daughter. I wish I could say that we got a lot done or did something important like discover a cure for cystic fibrosis while playing with Zoobles in our living room, but we didn’t, though I did make sure Zoobleland is CF-free. All of the little critters are healthy. There’s something to be said for being able to turn yourself into a protective ball when needed. This magic power allows Zoobles to escape all illness and evil in the world. I wish I could do the same.

The damn Zoobles had a party and drank my Cayston, which is like 80 proof alcohol to them.

So, when we weren’t playing with little plastic toys made in China, the two of us spent a lot of time being potatoes, or slow-moving potatoes, which one might call turtles. We played Donkey Kong Wii and did some shopping. We looked for a new pre-owned car, which was a major pain in the ass and a task that is still unfinished. Thinking back on the time now, I’m not sure where it went or exactly what we did to fill every moment. But it passed, and it passed without going to the hospital.

Though time went by fast, it wasn’t stress-free. I had plenty of blood streaks to remind me it was there, waiting, lurking, ready to explode without warning. But thanks to the miracle of Cayston and three treatments a day, I escaped the hospital. I’m so lucky. Have I mentioned that before?

I have a clinic appointment this week. Though I’m feeling okay, I need to speak to the doctor about the psychology of the blood and what it’s doing to me mentally. Every cough feels like it’s the beginning of a hospitalization. I took measures over the holidays to minimize the risk of bleeding, e.g., not exercising. My plan for 2011 is to get aggressive and exercise and force the blood to come out if it’s there. Then embolize it right away. I can’t go about living with such a nasty timebomb waiting to interrupt my life. I want to go after it and not feel like I’m waiting for it. It’s time to run into battle not flee it. Let’s see how that works out. I’ll keep you posted.

Stay healthy.

I was just thinking – National CF T-Shirt Day

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Here's a sample front view

Let’s have a national cystic fibrosis awareness day in which everyone fighting this disease wears a special CF T-shirt. If the idea plays out the way I think it might, one would wear a special CF T-shirt in public on a certain day and randomly see others wearing the same shirt. It’s all about that moment of solidarity with others in the fight who might cross paths without ever being aware of each other.

How many of us out there are involved in the fight against CF?

It would be fun to search for others wearing the shirt. We could post pictures online of some chance encounters. Of course, we might not be able to meet each other up close due to germs, but it would still be nice to know how many others are out there on a specified day.

It would take the help of the CF Foundation and other excellent organizations like sharktank.org, cysticlife.org,  BEF.org and cysticfibrosis.com to pull off a coordinated effort like this. CF bloggers could pitch in. Even CF clinics could join in the fun and promote the day. Everyone could come together for this one special promotion.

I'm sure someone can make a much better design. Just a thought starter for the back.

Someone would have to sell the limited edition shirt and everyone would have to communicate the day to wear the t-shirt, which would be best in summer (t-shirt weather). The nice thing about t-shirts is that they’re not that expensive. And all profits could go to the Foundation, sharktank, cysticlife, cysticfibrosis.com or whoever sells the shirts. I’d order at least three for my family and more for friends. The shirt would have to be colorful – yellow or orange or lime green. It needs to stand out.

Who knows what publicity it might generate with news media?

In my crazy mind it would be similar to something the artist Christo does when he wraps a bridge in colorful fabric or places gates in Central Park. It would be a living, breathing, moving display of the fight against cystic fibrosis. Oh, and let’s not forget our friends in England, Canada and other countries. We are one in the fight. And on one summer day in 2011, let’s see how large our army is. Am I crazy? Don’t answer that.

Happy Holidays

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I wish everyone the best of holidays. Thank you for your visits and comments, and I hope for only the best of health and happiness for each of you and your families.

Here are a few fun photos from our Christmas.

A couple of years ago, I pranked my 6-year-old daughter with a nutcracker trick. Each day in December, I left a new nutcracker in the house with a note on it. The note explained that the nutcrackers had chosen our house for a very special gathering during the holidays and my daughter should prepare for the arrival of the Nutcracker King.

The joke went well at first with my daughter buying into the festivities. That is until I wrote in one of the notes that the nutcrackers would be leaving after the holidays. This brought tears and ended the fun for her, as she didn’t want to see Hans and Franz, the king’s attendants and the ones I did the cute voices for, leave the house to return the next year. We had to agree that some nutcrackers would stay on after the holidays. And to this day, we have a few select nutcrackers hanging around our house year round.

Now most of the nutcrackers I bought hang out on our nutcracker tree below.

This year, my wife and daughter built a gingerbread house. It turned out pretty nice. They were excited because the kit included fondant, which is used on Food Network Challenges.

I wasn't allowed to help because I ate the ingredients

Here’s a picture of our Christmas tree. I used Hipstamatic on my wife’s iPhone and shot it “old school” style. They did a nice job and I supervised, which really made all of the difference. I’m an excellent couch supervisor, though my daughter barked at me to help. I did my tours of duty as a kid setting up a fake tree for my mom and helping to decorate it. Now that I think of it, I may have supervised the hanging of the ornaments back then, too.

 

Old-fashioned photos by Hipstamatic

Best of health and holidays to all.

“Me Time” Is Overrated

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My sense of isolation has increased over the years as this disease has worsened. During the past three months and the hemoptysis surprise parties I’ve had, I’ve felt more isolated. I have friends, but it’s hard to plan getting together. At times, when my lungs have gone south, it’s an effort to speak. Or, there are the times I just don’t feel well, which have increased. It’s harder to make an effort to hang out, and easier to stay home.

Life is like a postcard here in L.A.

Then add Los Angeles to the equation. It may seem strange to say that this expansive city of millions can feel isolating, but it can and does. Everything is spread out here, including my friends. And what may be a short drive in distance can take forever thanks to the worst traffic in the country. Visits across town take planning. You can’t just drop in on someone. Add to that the fact everyone is busier these days making ends meet and managing life. Even my healthy friends are tired.

The daily management of CF and time spent doing treatments each day interferes with going out or having friends over. I laugh when I fill out CF “quality of life” surveys. I have a great life, but the question asking if CF gets in the way of my doing stuff makes me want to ram my head against a wall. I need an answer choice of “F**k yes, it gets in my way. Are you kidding?” Clearly, someone with CF didn’t write that question because they’d already know the answer is yes.  Okay, maybe not for all CFers. I don’t want to make that assumption. I hope it doesn’t for everyone. Just place a permanent check mark in my survey, please.

So, it’s Christmastime and I’m lucky. But I would have loved to have had a holiday party this season, which I say we’re going to do each year, but we didn’t yet again. Life with CF got in the way. The blood came after Thanksgiving and it was “all hands on deck” mode to maintain life as we know it. Now I’m on blood watch, as the streaks have returned and it’s anyone’s guess when my lung pops again. Can you say “fourth embolization coming up?”

Life is good. Yet, CF can make it feel like normal life is going on while I sit at the computer with a nebulizer in my mouth. That’s the “me time” I’d happily exchange for “hanging out with friends” time.